triplle negative lumpectomy or masectomy- NEW POST!!!

FormerMember
FormerMember
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Hi all, think the reason these threads are so quite is because this special group on tnbc is a bit hidden. I have been posting on the main site which is normally occupied by those that her hormone positive so tend no to respond. I am hoping to get lucky today thought, fingers crossed responses will come in. I am 30 yrs old diagnosed this year january 2011, tnbc stage 3, grade 3,. Very large tumor, think about 7cm initially (very big up top) Currently on neojuvent chemo to try and shrink lump, small traces in 1 sentinol node, not sure about mmain others yet, awaiting surgery. My oncoligist and team seem very keen to give me ,lumpectomy rather than masectomy, which i not too happy about as this is obvioucsly very aggressive and i think may also me multifocal. i have read on the internant that although long term survival rates may not be that different, re-currance rates are higher with just the lumpectomy. I had assumed they were going to just take both off previously to me starting treatment. I know this is a long shot as this forum is rather quiet, but please if you have any experience about this then feel free to post a response. I am on a 5th cycle (3 fec) and 3 (t) so one more left but will be having a blood transfusion in 2 days Hb levels are ridicuolosy low, oh well.

 

Oh yh, also very confused by consultants saying that i am responding well to chemotherapy but i can still feel the large lump? have expressed concerns but still not 100% grasping. shouldnt the lump just shrink, get smaller drastically if the chemo is working as i have read so many times. hmmm, again any feedback would be helpful. as i have been told, the tests dont lie.

 

All the best everyone and look forward to your responses xx tamli30

  • FormerMember
    FormerMember

    Hi Tamli,

                   I havent posted in ages. It seems sometimes I need endless cancer information, or I sherk away from it altogether. I was really ill for a while and didnt want to post and scare anyone too. Its like waves.

         I also have/ had grade 3 tnc. I had a quadrantecomy (|I also feel I may have had more faith in a full mastectomy but the docs insisted it wasnt neccessary). I eventually found out they didnt get c;earance margins but went as deep and wide as they could and just hoped the chemo and radio would mop up anything left. Chemo made me very ill and it was reduced which worried me also. Radio was fine. I was told Id be reviewed in 6 weeks...which still hasnt happened!

        My treatments are over and my hair is starting to grow back so Im not going to go looking for trouble. If Mr C wants me again he'll have to find me! lol. Stay positive and allow yourself the time to be ill and get better. Things just gotta run their course. Hope the rest of your treatments go well for you chic.x

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Sally, Thank u for sharing your experience with me. Have not yet heard of the operation you had the quadrantecomy before you had posted but from what you said it doesnt seem as though it turned out how u had hoped. I dont think that it would be good for me as i am having chemo first so they may want clear margins afterwards, who knows? Was your lump quite big as well then?

    Good news your treatments are now over and that your hair is now growing back. Have you been given the all clear now though? i will definatly take your comments on board thought. Take care and thanks again xx

     

    tamli30

  • FormerMember
    FormerMember in reply to FormerMember

    A quadrantectomy is just a partial mastectomy.They always want clear margins so its a bit of a downer that they didnt get them. My lump was only about 3 cm but the cancer cells in the surrounding tissues were well spread. Clearance margins are basically the guage by which they decide whether or not the op has been successful. I had seen 3 doctors before I got a straight answer to that. I had a sentinal node biopsy and it looks like it hadnt spread to my lymphnodes which is good. Ive had neutropenic sepsis a few times, mucusitis etc so any side effects let me know and I will share my advice.

        I thought at the end of my treatments Id have a big check up, ct scan or something and given the all clear. Really gutted to get to my last day of radio and just sent on my way like every other day. They said they dont give you the all clear. Just take it for granted that you no longer have cancer and if it reoccurs you have better knowledge to catch it sooner or at a review (which as I said I havent even received an appointment yet). Makes the celebrations a little tentative.

        when are you expecting your op?

  • FormerMember
    FormerMember in reply to FormerMember

    HI sally, well my last 6 treatment chemo is now booked for 31st may then hopefully op will be about 4-6 weeks after that so about july sometime. just came back from blood transfusion was there all day, hb was very low. They have established mine has travelled to one sentinal node at least so will check main lymphs not sure if i will get full clearance or few removed, but my lump is much larger than yours so wouldnt be surpised if it has but we'll see. i was surpised to hear you didnt have a final big check up afterwards especiallyas we dont even have the luxury of hormone tablets or anything, when was your last radio treatment again by the way? I have a suspicious feeling that they made put me back onto chemo after the op if they dont get clear margins, so i am anticipating that. My veins are completely knackered, hope they are able to find one in 3 weeks, they werent even able to get the pick line in they are so hardnend.

     

    Well, i didnt get much response to my original post so im still thinking i would like full mascetomy for both breasts. Apparently doctors dont like to trouble "good" breasts but i dont really see why i should have to wait for anything else especially as tnbc is so aggressive and tends to reccur. Do u know what stage you were as well. dont really know anyone else who is at stage 3, grade 3 like me, gulp, think i may be a lone soldier in this catergory. Oh well...

     

    Take care xx Tamli

  • FormerMember
    FormerMember in reply to FormerMember

    Hi ya

         I was stage 3 grade 3 too. I didnt really get a say in the op.I also asked for reconstruction which was refused. In their opinion my breasts look fine. Didnt seem to matter what my opinion was. Ive also asked for genetic testing with my kids etc in mind. I had a blood transfusion in Dec. Seemed a bit weird as I used to be a blood donor.Oh how life changes. I had a picc line fitted and it was the best thing I ever did so I hope that works out for you. I had my last radiotherapy almost 8 weeks ago. My surgeon sent for me for my 6 month review. The appointment was at the same time as my radio so I phoned the day I got my letter and I still had to wait a further 11 weeks to rescheduel. Ive also had a really bad chemo induced abcess which needs an op. My gp referred me as urgent (Ive had it since Nov) and the hospital consultant (whom Ive never met) downgraded it to routine so Ive to wait a further 13 weeks. Feeling a little forgottem to be honest. Sorry for moaning......Its hard to be positive all the time! lol. All will be fine. Theres plenty of partying left in me! :o)

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Sally,

     

    Good to hear from you, thanks again for responding. I can appreciate you probably wanting to just move on with your life and trying to put this all behind you especially being only few months ahead of me.

    Alot of what you detailed are things im going to experience (well hopefully) in short coming future in regard to appointments etc and feeling left on your own to get on with life, im not really under any illusions in regards to that really, i guess from the consultants perspective  they have done what they can to treat. I mean but even now, when i feel good i still try and and make the most of every opportunity to do something fun, its normally relatives who tell me not to go out! infections and stuff. whats mucusities anyway, is that to do with the throat as i think i may have had that after each cycle, constant need to get rid of saliva?? Had ultrasound appt today and doc tried putting markers on tumour as it is shrinking so want to make sure they operate on the right area....but...surprise, surprise they couldnt do it, kept moving around or something, not sure, another appt made for next monday, 2nd time lucky.

    So have you managed to go back to work then (if you had worked previously). I just keep sending in sick notes every month.

    Hope your abcess isn't too painful :( my aunt had one the other day she got it too) lucky to hav support from her. So next review in 6 months time then for you, great. Im sure like you said you will be having alot of fun during that time, no need to worry about contact with others etc.. lucky u. Daughter has early birthday party in the morning so early night for me.

    hope to catch up soon xx tamli

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Everyone,

    I was diagnosed in March this year with grade 3 TNBC.  I am only 33 with no family history, so it came as a bit of a shock, although after the ultrasound, mammograms and biopsy I was pretty certain the news wasn't going to be good.  I had a lumpectomy and sentinel node biopsy at the end of March, the node came back clear but one of my margins wasn't, so I had a re-excision in April.  The results from that came back clear, but I only had 1mm of clear margin in one area so they wanted to take a bit more just to be on the safe side.  So I went on holiday for a fortnight (it was already booked and I was buggered if I was going to miss it!) then came back and had my 3rd operation last week.

    I've seen the oncologist and he has recommended 6 x FEC-T followed by 15 doses of radiotherapy.  I'm really not happy about the chemo and am seeing him again tomorrow to talk through it all.  I also get the results of the last operation tomorrow, so it's going to be an emotional day.

    I would love to know what caused my cancer, but I guess it's one of those things I will probably never find out.

    Hope everyone else is doing ok.

    Alison